scholarly journals Protocol for a thematic synthesis to identify key themes and messages from a palliative care research network

2016 ◽  
Vol 9 (1) ◽  
Author(s):  
Emma Nicholson ◽  
Tara Murphy ◽  
Philip Larkin ◽  
Charles Normand ◽  
Suzanne Guerin
Keyword(s):  
Palliative Care ◽  
Research Network ◽  
Thematic Synthesis ◽  
Care Research

Findings From a Thematic Synthesis of Key Messages From a Palliative Care Research Network: The KINDLE Project

2018 ◽  
Vol 36 (3) ◽  
pp. 241-248
Author(s):  
Emma Nicholson ◽  
Tara Murphy ◽  
Philip Larkin ◽  
Charles Normand ◽  
Suzanne Guerin
Keyword(s):  
Palliative Care ◽  
Meta Analysis ◽  
Evidence Base ◽  
Research Network ◽  
Thematic Synthesis ◽  
Care Research ◽  
Academic Activities ◽  
Conference Presentations ◽  
Web Social ◽  
Caregiver Role

Background: Effective palliative care requires a strong evidence base to advance clinical practice and policy-making. Calls for more collaborative and strategic approaches to research have resulted in the development of research networks at national and wider regional levels. Aim: The aim was to synthesize the learning arising from the activities of the Palliative Care Research Network from the island of Ireland, in order to identify the overarching messages from these activities. The ultimate aim is to promote the communication of these messages to practice. Design: The study developed a systematic search process influenced by Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines, with analysis of data adopting a qualitative critical interpretative synthesis approach using thematic synthesis. Participants: In total, 142 dissemination products were sourced from 22 associated projects, including peer-reviewed publications, conference presentations, reports, and web/social media posts. Results: The synthesis of dissemination products identified 4 key themes relating to palliative care research and practice: (1) addressing the needs of patients while recognizing the caregiver role, (2) equal access to connected services, (3) general and specific needs in palliative care research, and (4) challenges in palliative care research. Conclusions: The key themes identified relate to challenges in both practice and research, highlighting the complexity of palliative care provision that aims to support both patients and carers, and research in this area. However, an important implication is the need for a broader approach to dissemination (beyond traditional academic activities) to ensure that research in palliative care is well placed to inform both practice and policy.

scholarly journals An evaluation of the experiences of young people in Patient and Public Involvement for palliative care research

2021 ◽  
pp. 026921632199930
Author(s):  
Sarah J Mitchell ◽  
Anne-Marie Slowther ◽  
Jane Coad ◽  
Dena Khan ◽  
Mohini Samani ◽  
...  
Keyword(s):  
Palliative Care ◽  
Young People ◽  
Public Involvement ◽  
Research Study ◽  
Patient And Public Involvement ◽  
Subject Area ◽  
Research Network ◽  
Care Research ◽  
Paediatric Palliative Care ◽  
The Impact

Background: The active involvement of patients and the public in the design and conduct of research (Patient and Public Involvement) is important to add relevance and context. There are particular considerations for involving children and young people in research in potentially sensitive and emotional subject areas such as palliative care. Aim: To evaluate the experiences of young people of Patient and Public Involvement for a paediatric palliative care research study. Design: Anonymous written feedback was collected from group members about their experiences of Patient and Public Involvement in a paediatric palliative care research study. An inductive thematic analysis of the feedback was conducted using NVivo. Setting / Participants: Young people aged 12–22 years who were members of existing advisory groups at a children’s hospital, hospice and the clinical research network in the West Midlands, UK. Results: Feedback was provided by 30 young people at three meetings, held between December 2016 and February 2017. Three themes emerged: (1) Involvement: Young people have a desire to be involved in palliative care research, and recognise the importance of the subject area. (2) Impact: Researchers should demonstrate the impact of the involvement work on the research, by regularly providing feedback. (3) Learning: Opportunities to learn both about the topic and about research more widely were valued. Conclusions: Young people want to be involved in palliative care research, and recognise its importance. A continuous relationship with the researcher throughout the study, with clear demonstration of the impact that their input has on the research plans, are important.

Establishing and testing a palliative care research network in Sweden

2004 ◽  
Vol 18 (2) ◽  
pp. 139-139 ◽  
Author(s):  
Staffan Lundström ◽  
Peter Strang
Keyword(s):  
Palliative Care ◽  
Research Network ◽  
Care Research

scholarly journals Pan-Canadian Framework for Palliative and End-of-Life Care Research

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 175s-175s
Author(s):  
J. Bray ◽  
S. Robbins ◽  
D. Dudgeon ◽  
K. Badovinac ◽  
R. Urquhart ◽  
...  
Keyword(s):  
Cancer Research ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Research Funding ◽  
Data Access ◽  
Research Network ◽  
Successful Implementation ◽  
Life Care ◽  
Care Research

Background and context: Ongoing advances have been made in the conceptualization and operationalization of palliative and end-of-life care (PEOLC) (e.g., palliative approaches to care, early identification of people who would benefit from palliative care). In addition, Canada has been a leader in PEOLC research and continues to have an internationally recognized research community. However, many Canadians continue to experience unnecessary pain and suffering at the end of life and receive care inconsistent with their goals and preferences. Within this context, the Canadian Cancer Research Alliance (CCRA) sought to develop a national research framework to guide Canada's cancer research funders in response to their strategic priority to improve the patient experience and quality of life for all cancer patients. Aim: To develop and implement a national framework and recommendations to enable funders to capitalize on existing research strengths and build capacity to address unmet needs to advance the field and broaden the scope, beyond its historical affiliation with advanced cancer, to include PEOLC for all those living and dying with life-limiting conditions. Strategy/Tactics: The framework's development was informed by multiple approaches, including: a strategic literature review; an analysis of PEOLC research funding in Canada from 2005-13; and an online survey and key informant interviews from the broader stakeholder community. Program/Policy process: A working group of CCRA member representatives and palliative care experts met regularly to provide guidance and feedback to a consultant who synthesized the data and formulated recommendations. In total, > 200 stakeholders (e.g., patients, caregivers, researchers, volunteers, practitioners, decision-makers, and policy-makers) provided input through the survey and interviews. Outcomes: The Pan-Canadian Framework for Palliative and End-of-Life Research was released March 2017. It emphasizes priorities for research funding across three broad themes: 1) Transforming models of care; 2) Patient and family centredness; and 3) Ensuring equity. The identified research priorities are underpinned by four building blocks: capacity building; knowledge, synthesis, exchange, and implementation; data access and standardization; and research network development. What was learned: Successful implementation of the framework's recommendations requires strong leadership from champions within the community. The formation of the Pan-Canadian Palliative Care Research Collaborative led by palliative care clinician-researchers, in response to the identified need for a research network, is an example of an early success resulting from release of the framework. Continued efforts are needed to ensure ongoing uptake of the framework's recommendations. CCRA members have commenced planning to identify next steps for joint action.

Symptom Assessment in Palliative Care: A Need for International Collaboration

2008 ◽  
Vol 26 (23) ◽  
pp. 3867-3873 ◽  
Author(s):  
Stein Kaasa ◽  
Jon Håvard Loge ◽  
Peter Fayers ◽  
Augusto Caraceni ◽  
Florian Strasser ◽  
...  
Keyword(s):  
Palliative Care ◽  
Digital Media ◽  
Information Transfer ◽  
Assessment Tool ◽  
Research Strategy ◽  
Assessment Tools ◽  
Research Network ◽  
Face To Face ◽  
Care Research ◽  
Electronic Assessment

This article describes the research strategy for the development of a computerized assessment tool as part of a European Union (EU)–funded project, the European Palliative Care Research Collaborative (EPCRC). The EPCRC is funded through the Sixth Framework Program of the EU with major objectives to develop a computer-based assessment and classification tool for pain, depression, and cachexia. A systematic approach will be applied for the tool development with emphasis on multicultural and multilanguage challenges across Europe. The EPCRC is based on a long lasting collaboration within the European Association for Palliative Care Research Network. The ongoing change in society towards greatly increased use of communication as well as information transfer via digital systems will rapidly change the health care system. Therefore, patient-centered outcome assessment tools applicable for both clinic and research should be developed. Report of symptoms via digital media provides a start for face-to-face communication, treatment decisions, and assessment of treatment effects. The increased use of electronic media for exchange of information may facilitate the development and use of electronic assessment tools and decision-making systems in oncology. In the future, patients may find that a combination of a face-to-face interview plus a transfer of information of subjective symptoms by electronic means will optimize treatment.

Establishment and preliminary outcomes of a palliative care research network

2015 ◽  
Vol 14 (1) ◽  
pp. 52-59 ◽  
Author(s):  
Peter Hudson ◽  
Annette Street ◽  
Suzanne Graham ◽  
Sanchia Aranda ◽  
Margaret O'Connor ◽  
...  
Keyword(s):  
Palliative Care ◽  
Collaborative Research ◽  
Strong Support ◽  
The State ◽  
Research Network ◽  
Care Provision ◽  
Cross Sectional ◽  
Care Research ◽  
Preliminary Study ◽  
Collection Strategies

ABSTRACTObjective:The difficulties in conducting palliative care research have been widely acknowledged. In order to generate the evidence needed to underpin palliative care provision, collaborative research is considered essential. Prior to formalizing the development of a research network for the state of Victoria, Australia, a preliminary study was undertaken to ascertain interest and recommendations for the design of such a collaboration.Method:Three data-collection strategies were used: a cross-sectional questionnaire, interviews, and workshops. The questionnaire was completed by multidisciplinary palliative care specialists from across the state (n = 61); interviews were conducted with senior clinicians and academics (n = 21) followed by two stakeholder workshops (n = 29). The questionnaire was constructed specifically for this study, measuring involvement of and perceptions of palliative care research.Results:Both the interview and the questionnaire data demonstrated strong support for a palliative care research network and aided in establishing a research agenda. The stakeholder workshops assisted with strategies for the formation of the Palliative Care Research Network Victoria (PCRNV) and guided the development of the mission and strategic plan.Significance of results:The research and efforts to date to establish the PCRNV are encouraging and provide optimism for the evolution of palliative care research in Australia. The international implications are highlighted.

scholarly journals Creating a palliative care research network in Queensland, Australia – is this the answer?

2005 ◽  
Vol 13 (5) ◽  
pp. 277-281 ◽  
Author(s):  
J. Hardy ◽  
K. Dingle ◽  
H. Beebe ◽  
P. Yates
Keyword(s):  
Palliative Care ◽  
Research Network ◽  
Care Research
Sign in / Sign up

Export Citation Format

Share Document